Menu

This was originally an email written to my family and friends on the date above. I decided to make these public in the event they may be helpful to someone in the future who is embarking on a similar journey to mine.

Hi Everyone,

On Friday afternoon I had my initial interview for the TAS-102 trial. As is standard with these appointments, we reviewed my history, the treatment schedule, side effects (they sound relatively mild), and I signed the consent form to volunteer for the study. From there I needed to get blood work and a CT scan to establish my starting baseline. I was able to get these done and I started the new trial drug yesterday.

The schedule for this trial is a little complicated. It’s a pill rather than an infusion.

Week 1 & 2: take 3 pills in the morning and 3 pills at night for 5 days, then 2 days off
Week 3 & 4: off week – no pills

However, there was one wrinkle. At the beginning of my appointment they took my vitals (height, weight, pulse, blood pressure, and oxygen levels). My oxygen level was too low; below 90 (which supported my anecdotal feelings of shortness of breath, etc. of late).

I called Kaiser and they recommended I go to Urgent Care since it was Friday at 5pm by then. We did so, but ended up at a facility that only offered Urgent Care on Saturday and Sunday. They gave me an oxygen tank and instructed us to go to the ER – basically the nurse said I was risking brain damage because of the low oxygen levels.

So off we went to the ER. My mom was staying with me this past week while Heather and Caitlin were visiting Heather’s family in Minnesota, so she was the lucky one that got to chauffeur and accompany me on this adventure.

At the ER I did my best to convince them to just give me the referral necessary for the oxygen. We were already planning to schedule the CT scan and blood work for this week, so I figured doing as little as possible at the ER was probably best. However, the ER doctor was concerned about blood clots as a potential cause of the low oxygen and wanted to run some blood work as well as a CT scan. I relented, with the caveat that we also do the CT scan I needed for the trial baseline.

The results were as expected: no clots or anything, the cause of the low oxygen was due to “progression of disease” – additional growth in the masses in my lungs.

We were able to get home just before midnight, and the folks that do the home oxygen set-up came over that night to give me a basic kit: a unit for the house with 50 feet of tubing so I can roam around like we did back in the day before cordless telephones. They returned the next day to give us portable oxygen tanks and a unit to refill them as well.

So yeah, our Friday night was pretty awesome!

I had originally hoped to get started on this trial a few weeks ago, but as it turned out my “washout” period (time off from any treatment) ended up being a bit longer than I’d hoped while we waited for a slot to open in the trial. This has giving my fast growing cells a chance to start coming back (including the ones we don’t want). The shortness of breath has been bothering me for a week or so now and my hair started coming back in earnest around the same time.

Hopefully, now that I’m on the trial we’ll get some reduction in the masses in my lungs (as we have in the past) with a matching improvement in my oxygen levels.

Side effects-wise, the new trial shouldn’t cause hair loss like the last one did and my returning hair is coming in much darker than the hair I lost. Maybe it will lighten up again over time. The doctor told me to expect some nausea, and I did have some yesterday in my first dosage. I took an anti-nausea pill for the evening at that seemed to make things better.

So I’ve made it onto the trial – send good wishes for effective results and manageable side effects.

This post is part of the thread: Cancer – an ongoing story on this site. View the thread timeline for more context on this post.

What a nice surprise. FastMail1 is one of the internet services I’ve used the longest; surviving several ownership changes. That’s not easy – great job pulling it off and continuing to offer stellar service.

The idea of an entrepreneur is to ideally build a company that is bigger than the founder. In the early days you are critical, but over time your job is to build systems and hire people (or teams of people) to fill in these critical roles. In many ways the true measure of success is when you’ve managed to make yourself no longer a necessary piece.

I often said that my job at Crowd Favorite was to make myself redundant. And then to build redundancy into the team, processes, etc.

I ended up doing this when I got my iPhone 6 because it was acting possessed. On all of my prior iPhones, I had restored from my previous phone’s backup. Ultimately, starting fresh fixed all sorts of weird little things as well as larger issues like TouchID: it had never worked for me on my iPhone 5S or my iPhone 6 until I did the fresh install on the iPhone 6. It’s more work to do the initial set-up, but I’ll be installing from scratch from now on.

Fascinating read. I’m glad to see this type of introspection and process from Adobe; especially in light of indirect challenges from the likes of apps like Sketch that were built ground-up with these types of workflows in mind.

This was originally an email written to my family and friends on the date above. I decided to make these public in the event they may be helpful to someone in the future who is embarking on a similar journey to mine.

Hi Everyone,

As expected, when I had my latest CT scan about 6 weeks ago it showed that the clinical trial I had been on since the beginning of the year was no longer being effective for me. We were expecting this based on some other symptoms, and my doctor and I had already targeted a new trial to try to join. Since that time, I’ve been in a “washout” period – basically a period of no treatment before starting a new trial. They want to make sure that the results they are measuring are from the current trial, and that any other trial drugs have cleared your system. A 4 week period without any treatment is pretty typical.

I spent the month of June negotiating red tape to get an appointment to try to get into a trial for a drug called “TAS-102″ based on the recommendation of my doctor at the University of Colorado (who I have been going to for the last 2 clinical trials).

This trial is at a different medical facility and trying to get me set up in their system was apparently non-trivial. About 2 weeks ago I was finally able to get an appointment booked to interview for the trial. Then a day later I got a call canceling the appointment because they no longer had any open slots in the trial. After taking so long to get the appointment in the first place, I found this exceedingly frustrating. Basically I was all washed out and ready for the next trial, but in need of a trial to join.

Thankfully, I got a call yesterday letting me know that they now had a slot available for the TAS-102 trial. I have an appointment to meet with the doctor who is administering the trial on Friday, July 24th. Hopefully things will go smoothly on both the bureaucratic and medical sides of things and I’ll be able to get going on the new trial soon thereafter.

I’m feeling OK, but can tell I’m no longer on treatment. I’m back to needing a shave every day or two (from once a week), and I seem to have picked up a mild cold which is causing a bit of a cough and a little shortness of breath (both familiar to me from my last washout period). I’ve had some back pain recurrence as well, but this time around it has had some direct causes and I’m better at managing it.

A couple of weeks ago I went camping and slept on an air mattress. That was a mistake. I had to bail and head home a day early to return to my own bed; and it took a few days to get things back under control. I had a similar situation when I flew to Seattle (and back) over the last week. Thankfully, since I’ve been through this (back pain) before, I’ve got a better sense of how to handle it this time around.

For example, I’ve found that using marijuana edibles when I go to bed will give me a solid night’s sleep, and it keeps me away from the unpleasant side effects of morphine pills. I also know how to stagger my pain patches and make judicious use of the hot tub and napping to help keep things under control.

With that in mind, I leave you with my current wish list:

1. an uneventful next week and a half
2. that I’m able to get into the trial
3. that the trial is effective

Thanks!

This post is part of the thread: Cancer – an ongoing story on this site. View the thread timeline for more context on this post.

As Devin notes, these may not all be earthshaking revelations. However, the stories that lead him to each conclusion are unique to his experience and that’s the beauty of the personal narrative; an area where the blog format continues to excel.

Manton writes about a few workflows here the follows it up with the post I’ve linked to.

FWIW I’ve posted to my own site first then passed stuff along to Twitter and Facebook since we released the Social plugin for WordPress back in 2011. Each of my posts has a link to its counterpart on Twitter and Facebook, and reactions on those networks are brought back in as comments on this site. Special handling is done to thread comments based on Twitter’s reply_to property, as well as a retweets, etc. More details about how this works can be found in the blog post I wrote back in January on the Crowd Favorite blog.

When I’m mobile, I’ve found that using the WordPress admin web interface is better for my needs than the iOS app. Mainly because of additional post meta that I utilize on this site.